Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Thursday, December 3, 2009

I woke up this morning, woke my son up, and immediately proceeded to gag like I was going to throw up on him.

Some kids get alarm clocks, my son gets mommy vomiting sounds as a wake up call.

X took this as some sort of wake up challenge and immediately showed me that he too could fake a serious vomit, gagging but not quite throwing up.

GGRRRREEEAAATTTT.

This is what X has learned from me: how to be an alpha faker.

I see his Munchausen’s diagnosis in the future.

For now though, there are a few things this six year old knows. He knows there are two symptoms that will immediately get him out of attending school: throwing up and/or a fever.

He’s all ready started to try manipulating the thermometer. He knows normal is 98.6, but anything under 100 doesn’t count.

He tried so hard to get this reading the other day he broke our thermometer.

If he knows the symptoms and is this determined in the first grade to trick us into letting him stay home, I can only imagine what’s in store for our future.

Hopefully, I’ll stop throwing up every morning and he’ll forget what it looks like so he can’t fake it so well.

Let’s cross our fingers and hope this morning sickness is just a phase my body is going through, just part of H1N1 hanging out and not GVHD.

Until that determination is made I’ve been hitting up my marinol.

There is a reason why people just won’t let the legalize marijuana campaign go, and that’s because THC is effective for appetite stimulation and as an anti-emetic.

It actually works, but silly stoners, if you really needed it, you’d be getting it prescribed in pill form just like I am.

That’s legal enough for me.

Unfortunately, that didn’t stop me from throwing up in Walmart that other day.

I told J I was sick. I told him I wanted to go home and take a nap. I told him I was going to throw up.

But he just had to test it.

I know those minimum wage employees who clearly saw what I had for lunch twenty minutes before wish he had listened.

I don’t think he’ll be ignoring me again.

Despite my little problem of throwing up with little warning and for no good reason in public places, I’m still taking off to NYC for the weekend.

I’m a little apprehensive.

I had to unpack my hospital bag from my last stay to make room for my clothes for the weekend.

I guess it hasn’t been that long since I was an inpatient.

Worse, my body has started threatening to send me back.

My GVHD started to flare up on my skin.

Graft vs. host is interesting. I don’t know any other ailment that can burn a person from the inside out, but that’s what’s happening.

I got undressed to change into my PJs last night and whoa, burns, boils starting.

They start as little red marks and then turn into what looks like a blister before growing into what appears to be an all-out burn.

I fell asleep with little blisters and woke up with little ulcers. My skin is all ready trying to break wear my bra and underwear meet my skin.

Nasty little life threatening disease.

I keep telling myself I’ll be fine for the weekend.

It’s not a big trip. I’m going back to my old stomping ground.

We’re seeing the Rockettes, like we did every year while I was there.

We’re going to Radio City Music Hall, which is nothing more than where I had my college graduation ceremony.

Yes, I did get to walk across that stage, but somebody on high decided to separate me from my friends before we got to it.

I think they may have been trying to avoid “a scene,” but isn’t that what the stage is for?

I have planned my time to include naps if I need them, but still I know how exhausting everything is to me.

That, however, doesn’t matter.

I’m getting my game face on either way. We’re seeing the Christmas Spectacular. We’re shopping on Canal and in SoHo on Friday. We’re lunching in Little Italy.

On Saturday we’ll hit up Saks and Macy’s.

I will remember that the Empire State building is a tourist attraction and not just my old Dentist’s office, and point it out to Brynn.

Then, maybe, depending on how I’m feeling, we’ll hit up the club on Saturday.

I will not drag Brynn up to my friend’s places in Harlem. I’ll save that for next time. This time, we’re going to cozy up at The Waldorf.

I’ll keep you posted on my adventures, and now for some good news.

All future allo-transplants, listen up. New research has discovered a Blood Test Predicts Bone Marrow Transplant Complications, specifically which patients will develop GVH.

A simple blood test that may allow doctors to detect and treat bone marrow transplant complications up to two weeks sooner than is currently possible has been developed by Australian researchers.

This new test is designed to help doctors predict which patients will get graft versus host disease (GVHD), a complication that occurs when transplanted marrow attacks the patient's body, theAustralian Broadcasting Corporation reported.

GVHD is a problem in 85 percent of bone marrow transplants. The earlier it's detected, the easier it is to manage and cure.

The new test checks for levels of active cells in the blood called dendritic cells. The more dendritic cells, the greater the risk of developing GVHD.

"This is the very first time that we've been able to, in bone marrow transplantation, predict, before it happens, which patients will get acute graft versus host disease," researcher Prof. Derek Hart, director of the Mater Medical Research Institute in Brisbane, told the ABC.

The research appears in the journal Transplantation. The new blood test will now be tested in a two-year international study.

2 comments:

brynn said...

by the way...i know the empire state building. i have been there silly! :)

linda keenan said...

ummm I COULD NOT DO THAT NYC SCHEDULE! and i lived there for ten years. guess gvhd is not doing much to your drive!
my lymphoma friend is in manhattan (now she's a big fundraiser for research..) and if you need anything last minute run over to you let me know.